checkin' out my genes

[mattbell]

Two companies -- 23 and Me and deCODEme, just started offering personalized genetic testing.  The era has arrived sooner than I expected.

For $1000, they give you a vial to spit in, and a couple of weeks later you can log on to their website and find out your genetic risks for various diseases -- eg heart disease, diabetes, and more.

They don't sequence your entire genome, but they do look at over 500,000 polymorphism sites on the gene. 

Some things I noticed:

- DeCODEme seems to be a aimed more at a tech-literate audience, while 23 and Me seems to be much more aimed at a biotech-phobic audience. 

- You really have to dig to find out exactly what kind of report you get, and even then it's unclear what you will learn.  It appears that deCODEme has the wider list of diseases they screen for.  ( Our current list of diseases includes: Age-related macular degeneration, Asthma, Atrial fibrillation, Breast Cancer, Celiac Disease, Colorectal Cancer, Exfoliation Glaucoma XFG, Inflammatory Bowel Disease, Multiple sclerosis, Myocardial Infarction, Obesity, Prostate cancer, Psoriasis, Restless legs, Rheumatoid arthritis, Type 1 Diabetes and Type 2 Diabetes.)  However, since both sites gather lots of data, they may be able to tell you about the risks for other diseases in the future. 

- Both companies are taking a very conservative approach to what for many is a touchy subject.  They have some of the most consumer-friendly privacy policies I've seen, and explicitly call out that they won't ever tell insurance companies what they find without your permission.  They provide ways for you to hide your identity when doing the test.  DeCODEme has also made an explicit policy of not telling you anything about genetic diseases that you can't do anything to prevent.  Thus, they are driven towards vague, nonmedical assessments of risk.

- Both companies have an opt-in social network component.  This component is designed to help you, for example, connect with other people who have a high risk of diabetes and form a support group.  As frogpyjamas pointed out, people could also use the social network feature to create groups with goals like "I have a perfect genetic profile and I'm looking to breed... let's create a new master race".  It's the basic dystopian Gattaca scenario... don't just Google your date -- submit their saliva sample for genetic testing!

I'm strongly considering trying deCODEme, but I'm trying to figure out exactly what I'd be getting for my money.  Any expert opinions out there?





 

Comments

[frogpyjamas.livejournal.com]

My expert opinion is that you are perfectly good meat for breeding with without decoding. :P

[crasch.livejournal.com]

I've never had this done, but if the report begins, "You have no chance to survive, make your time...", it's not a good sign.

[arethiel.livejournal.com]

Maybe once you've found out you're totally screwed due to your genetic code, ye can go to dna11 and get a lovely piece of art based on it to curse at when you get that particular illness.

sounds like a plan.

[ferrouswheel.livejournal.com]

Only problem is that generally, if you are aware of a genetic condition, then you are obliged to reveal the information to insurance companies. Of course, how their inability to prove whether you know such a thing means it's probably not a problem to use these services.

Personally I'm very tempted to use those services too...

[nasu-dengaku.livejournal.com]

It's interesting that the decoding companies avoid telling you about the stuff that you can't prevent, like Huntington's disease. Instead they focus on things like heart disease where there is some genetic risk but it can be mitigated by exercise. Thus, by not being definitive in their report to you, you don't have to be definitive to insurance companies.

[patrissimo.livejournal.com]

Not telling you about diseases you can't do anything to prevent is kinda whacked. I mean, if a disease is suddenly going to kill me in 10 years, I'd want to know even if I couldn't prevent it.

Will any of them give you the full data they collect, so you can look up the sites yourself in that open-source database thingy they have?

I feel like I know about my cancer/heart disease risk from my family history. What I'd really want to know is stuff like "You have the problem that responds best to [diet/exercise/lipitor/whatever]". And I don't think they are there yet.

That said, if you can spare the money, I'm all in favor of early adoption of technologies that will someday be really cool, even if they aren't so cool now, in order to help fund their progress.

[nasu-dengaku.livejournal.com]

The nonpreventable disease things seems to be a an issue that provokes strong feelings on both sides. Some people really want to know, and others really don't.

What bothers me about both services is that neither one actually gives you all the SNP (single nucleotide polymorphisms) data. Thus you're tied to their service if you want to learn more about what they've found.

[resipisco.livejournal.com]

23andMe was one of the companies I was looking into applying to over the summer. They had this silly genetic sequence riddle to solve as part of their application pre-screen. Guessing it's Sergey's influence on his wife.

(As far as I could tell, the sequence was a mutation on one of the bone morphogenic proteins. Didn't bother going so far as to try to look for a genetic marker for a disease.)